Remicade, does it work for...

I can't say how long it will last for me personally, since I really just started a few months ago, but for most people, it does stop working eventually. How long it lasts is highly individual-there are some who take it for years and years and are still doing well. Then there are others for whom it never worked, or only worked slightly and for a very brief time. I don't think you can predict into which category you will fall, or if you will be somewhere in the middle. I think it is really hard to give averages with this kind of med.

I can say that if this med is similar to Humira in terms of range of effectiveness, then I should expect to get maybe a couple of years out of it, since Humira lasted a bit less than 2 years for me.

If Remicade does work for you, but fails, you can try Humira as well. It isn't approved yet, but is often approved on an individual basis if Remicade fails. My GI also mention Cimzia, which another TNF blocker not yet approved for UC, but perhaps it is similar in its approval based on failure of other meds? I suppose that given enough time, a person could med hop for a while.

I don't know how long I have on Remicade, but the TNF blockers have been great for me and have given me a quality of life that I wasn't sure I would ever have again. I know it will eventually fail, but in the meantime, I would be in a constant uphill battle that I would probably be losing, so for me it is worth whatever time it is giving me. Because while I am not afraid of surgery the way I used to be, I would still like to avoid it for the time being. And unless there are some other options that come about during my time on Remicade, surgery will probably be my next step after this.

Not knowing how back your symptoms are right now, I would not advise you to start or to avoid it, but I will say that if it turns out that it doesn't work well for you, trying it now versus later will not likely change that. But maybe this new combo of meds will help and the point will be moot!

My two and a half years on Remicade let me get off of Prednisone and let me prepare for the surgery -- coming to terms with it mentally, finding the right surgeon and saving money for the time off I was going to need (I'm self-employed, thank god I have good insurance through my husband!!).

I was very anti-surgery when it was first brought up, but honest to god, it was the best thing I have ever done and I only regret not deciding to go for it earlier. So, yeah, give the drugs a chance, but don't let yourself get too far gone before you get surgery if they aren't doing the trick or if they stop doing the trick. The healthier you are when you have the surgery the better your chances of avoiding complications. The fact that the Remi got me off Pred, and I was off Pred for two years before the surgery, and I was still mostly in remission at the time as well were a big factor in me sailing through the j-pouch surgeries.

The thought of removing an organ is definitely off-putting, but do the research and even consult with a surgeon -- you may or may not get to the point of having to do it, but the peace of mind when you know what to expect and learn that it's usually a highly successful procedure 90+% of the time helps. Having an experienced surgeon who performs A LOT of these procedures is extremely important, so doing your homework ahead of time is imperative.

So give Remicade a shot, even if it does not work MOST people tolerate it well and since you are given it in a hospital or infusion center if something DOES go wrong you are where you can instantly get help. You will be closely monitored for the first infusions until they see how you tolerate it. If it does work, even if only a few years, you got yourself that much farther down the road. (But don't worry too much about the surgery -- it's a touch few months but well worth it!!)

Meesh

I'm about to start remicade. and if it fails I'm not taking another med again. its gonna be the knife for me. I'd really need to stress the importance of surgery if meds fail for people. there is a symposium somewhere on the net if I can find it I'll repost. basically the doctor stresses the importance of surgery to reduce complications related with IBD in general. such as colon cancer, etc etc.

I have also been on Remicade for more than a year, and it is still working great, no blood at all. My GI says it has not stopped working for any of her patients, as long as they were not initially allergic.

It took until the 6th or 7th infusion for me to start feeling significantly better.  I have been on Remicade about 5 years now and things are going well.  After about 3 years I began to experience a reaction about 1 hour into the infusion, so the nurse stops it at about 48 minutes and administers another injection of benedryl, waits 5 minutes and then we proceed with the rest of the infusion uneventfully.  I am tired that same day and for the next couple of days.  I also get 200 mg. of Venofer after each infusion.

As I said, everything was doing well but it wasn't until I began my gluten free diet that things started to improve even more.  It is a difficult diet to adhere to but it pays off.  I just had a round of blood tests and the GI was very happy with my results.  She said she had never seen my results as good. Almost every test was in the normal range.  She had originally dismissed my desire to go gluten free because my biopsy was negative.  She now told me, I was right to have stuck with it.  She even told me I look great.  Hey at 60 years old, I never pass up a compliment.   I guess Remicade and gluten free is a winning combination for my body.

eh, I have mixed feelings about Remicade- on the one hand, it put me very close to remission for a long time. But, I still had urgency, occasional accidents, & had to spend 2+ hours running in & out of the bathroom in the mornings. Then it just up & quit entirely. I never felt like I had the "winning formula", just that things were a whole lot better with it than without. And scopes still showed active disease, despite the 6 week/higher dose schedule I was on. So on to Humira, which again has helped a lot, a lot more than Remicade, but... still no winning formaula, not by a long shot. I don't know, my immune system must be absolutely whacked, because I seem to make antibodies to the TNF blockers pretty darn fast! But to sum it up, I had originally scheduled surgery for Spring of 2008??? I believe, & have not yet had any surgery all becuase of the TNF blockers. So give 'em a shot, they usually can't hurt.

All remicade users, how is the hair loss with remicade... similar to 6mp or prednisone?

Please let me know,

knl2101 said...
All remicade users, how is the hair loss with remicade... similar to 6mp or prednisone?

Please let me know,

I havent noticed any extra side effects from Remicade. Most of the hair loss comes from Pred/Asacol.

Remicade working still at 1 year and 8 months-played with the dose a bit, and had a bad month some time back. No hair loss.
Its working miracles for now.

every person gets a different reaction, and all I can say is give it a try, I have been on Imuran for little over a month now with little improvement if any, and that is probably from the prednisone which I hate. and at 60 mg a day all it does is give me zits and a fat face. :( hopefully I can start remicade soon if I get approved for the charity at the hospital for the infusions (no insurance) but I do get the medication free from Johnson and Johnson. very lucky for that since it costs about 5k for the drug and 5k for the infusion costs. best of luck to everyone and at least give the meds a try. like I mentioned before if the remicade doesn't work. it's off to Canada for me for some free surgery.

and to Mackster. everyone reacts differently. look at what I'm on and no results. my friend with Crohn's has been on it for two years and its a life saver for her.

It failed after my 3rd infusion but I think people who have Crohn's Disease have more success on Remicade than people with UC...at least while I was getting my infusions I found that to be true.